How open medical charts help Healthy Survivorship

Does the opportunity for patients to read their medical charts help or hurt patients’ ability to become Healthy Survivors?

Open notes can facilitate Healthy Survivorship for some patients.

Unfortunately, other patients may learn something about their condition that makes it more difficult to get good care or live as fully as possible. Or they may experience feelings that threaten the physician-patient bond. Patients take a risk when reading notes intended for a medical audience.

Wait! If open notes become the norm, physicians will adapt their notes to accommodate the possibility their patients will read what is in the chart.

We’ve seen this happen before. After insurance representatives and malpractice lawyers began using physicians’ chart notes, clinicians notes began including information intended for insurance representatives and malpractice lawyers. For example, “Discussed with patient the risks and benefits of each treatment option.”

Similarly, as open notes become standard, clinicians will change their style of recording their findings, prognosis, conclusions and plans. Willingly or reluctantly, clinicians will change the possessive adjective from “my” to “our” when talking about a patient’s medical chart.

Are charts intended for both clinicians and patients helpful or harmful to Healthy Survivors?

Transparency

Is the transparency inherent in open charts conducive to Healthy Survivorship?

In most contexts, transparency is considered a virtue. But increasing transparency can have unintended negative consequences, too. With this in mind, let’s look at two challenges physicians face in the setting of open notes.

Medical jargon can have derogatory connotations in social settings. For example, clinicians today use the term “obese” as medical shorthand for “at least 20-30% above average weight for their height, age, and sex” (from Taber’s Cyclopedic Medical Dictionary). Patients reading their chart might be offended by the term “obese.” Others might conclude their physicians are making judgments about their character. Patients’ anger, shame or embarrassment could jeopardize the clinician-patient bond.

Detailed differential diagnoses serve clinicians, not patients. Physicians routinely record the many possible diagnoses for a problem, including serious problems that are highly unlikely. Patients reading their chart might freak out after learning about diseases that weren’t even on their radar. Patients’ distress can jeopardize the clinician-patient bond and create obstacles to Healthy Survivorship.

I believe clinicians can find ways to write their notes in ways that are less likely to cause problems for patients who read the notes, without jeopardizing the value of the notes to clinicians. It will take creativity and effort, but it can be done.

For me, the crux of the problem is this: Do open notes conflict with the ideal of compassionate care?

When I was in practice I spent a great deal of time and effort tailoring what I said to each patient when reviewing my findings and presenting my recommendations. Which facts I shared and how I phrased them depended on:

the patient’s preferences for information

the patient’s communication style

the patient’s level of medical knowledge

the patient’s medical situation

our relationship over time

I strived to communicate information in ways that promoted each patient’s Healthy Survivorship (even though back then I didn’t call it that!)

The act of breaking news — good or bad — and making recommendations were dynamic processes that occurred in real time. I constantly adjusted what I was saying, depending on the patient’s response to what was being said, as well as the patient’s questions or comments.

In contrast, physicians notes are stripped of what I’ll call “the filter of compassion” — words and actions that help patients hear and process medical information in healing ways.

I see now that my initial reservations reflect my knee-jerk reaction that open notes can’t possibly support compassionate care.

Perspective

Here are some practical tips for overcoming some of the challenges Healthy Survivors may face.

Language: You may feel offended by an acronym, word or phrase. First find out the intended meaning before drawing conclusions. It likely means something different in medical settings than in social settings. For example, “SOB” stands for shortness of breath.

Prognosis: You may feel disheartened — or despairing — after reading your prognosis. Again, be sure you know what a word means before drawing conclusions.

Words such as poor, guarded, grim and grave can feel like stabs to the heart, even if simply reinforcing something you already know. That’s because seeing it in print can make it feel more real, even when nothing has changed from yesterday.

Words such as favorable, optimistic and good can trigger fear or disappointment in some patients, too. As above, seeing a prognosis in print can make the recent (or current) threat to your health and life feel more real. Before your diagnosis, you likely did not hear or see a prognosis for your life.

Always keep in mind that a prognosis is not a prediction. Nothing pleased me more than when one of my patients did unexpectedly well and proved my prognosis wrong.

Conclusions

It’s a waste of time to argue about whether giving patients access to their chart is a good or bad idea. Patients have had the right to review and amend their charts since passage of the Health Insurance Portability and Accountability Act of 1996 (HIPAA). Information technology is here to stay. I believe it’s just a matter of time before electronic medical records are universal and patients read their charts more often than not.

The challenge for today’s clinicians is crafting chart notes that are (1) optimally useful by clinicians in the care of patients and (2) helpful — or, at least, not harmful — to patients who read their chart. This is no easy task and will require retraining on both sides of the stethoscope.

The challenge for today’s Healthy Survivors is learning how to read the chart and use the chart in healing ways. Until clinicians embrace the notion of patients reading their medical charts, patients may continue to face obstacles to obtaining the charts and using them in healing ways.

I now believe that both clinicians and patients will benefit when clinicians take advantage of the increased transparency of open notes to strengthen clinician-patient bonds. Chart notes that reflect effective and compassionate communication between patients and healthcare professionals can help pave the way for all patients to become Healthy Survivors.

How open medical charts help Healthy Survivorship 5 comments

It is interesting how often providers write about open charts being something in the future. Large systems like Group Health and Kaiser have had robust EHR in place for years now and they have found a solution.

Patients receive and are able to review an after visit summary that is customized for them, they also of course can view all of their labs and most imagining results as well as their problem lists and medications online as well.. The after visit summary is written in lay friendly language and has been shown to increase patient understanding and satisfaction.. Some patients might also want access to the clinical notes section as well but this option seems to be a good hybrid solution.

Beth

As a Kaiser patient, I have found that patient access to records is quite limited unless the patient goes out of his or her way to get copies. VERY few of my lab results are available online, despite all the chipper Kaiser radio and print ads stating that “most” test results are found there. It seems that if a test is of any consequence at all, the results will NOT be posted in the online Kaiser system, and I need to phone my doctor’s office to get them, which is tedious for everyone involved. The after-visit summary mentioned by @cascadia is pointlessly brief. I can meet with a specialist for 30-60 minutes and emerge with a piece of paper that gives only my height, weight, blood pressure, pulse, three words describing my current diagnosis, and a list of upcoming appointments that I already knew about. For me, this is worthless information. When I want to see my records, I go to the medical records department and fill out a form to request the specific information that I want. I have done this dozens of times. My doctors have apologized that the administration enforces this practice.

The Kaiser online medical records system has many advantages, but no one should be under the impression that because of it patients are routinely given a significant level of access to their records. It takes footwork and persistence to get them.

bw

Agree with the above comment. Also, missing from Dr. Harpham’s list of tailoring information to patient’s is the tone in her voice. Think on all the emails that have been misconstrued because it did not have inflection or tone to the language. Or even still, think of all the comments on this website that get taken as offensively because it lacks this essential part of human language. It takes a great deal of care to write words that convey the appropriate emotions. More time than primary care physicians have.

hcprof.

But it still beats a patient trying to remember all that was discussed in a 10 minute visit.

riv

One of the things I found upon reading my medical records was that physicians would say they told me about a drug’s risks (informed consent) when they had not. This happened repeatedly. In some cases, I had told THEM about a drug’s risk, and that being why I wouldn’t take it. I also found mistake after mistake, and worse, found my corrections were ignored, and the previous error taken as gospel. An example. “the patient says she doesn’t exercise”. I’m a lifelong athlete! It became clear to me they go with something one of their colleagues has charted, right or wrong. In fact, it appears a physician can never be wrong.